DLA- SPECIAL RULES 3 YEARS ON

I have just been told to reapply for DLA ,which I have been receiving for 3 years under special rules, since I was diagnosed with BC, and lung mets. Obviously, I am still here, and wonder what anybody else’s experience has been reapplying under special rules? Am I less likely to be given the highest amount because I have lived for 3 years`/
thanks
nicky

Hi Nicky,

The answer is ‘No’ !!

Just tick the box for special rules. Did you get mobility as well?

If you are unsure, just see a Macmillan Advisor and get help filling it in (usually at the hospital).

I have assisted people and it has been renewed, without fuss, for a further 3 years !!!

How are you anyway??

Julie

Hi – I received DLA under “special rules” over six years ago, when I was dx with liver & bone mets – GP signed the DS1500. The DWP is now reviewing my claim (!) and asked me to send them info about my GP, onc & meds. I don’t know what to make of it either, as it’s not likely that I’m less incurable or terminal than I was in 2003, just lucky to still be here. Will let you all know what happens next.
Marilyn x

Hi

I too have got to reapply after 3 yers - filled in wot needed to and gave to my onc yesyerday for the ds1500 form he needs to do. So will wait to see wot happens.

Love

Dawn
xx

Me too, been wondering what to do with the form that popped through my letterbox. Think I will do like you, Dawn, fill in my bit then send to onc and let him decide if i still qualify. Was talking about it earlier with OH, and clocking up all the ‘costs’ of having BC and still being on regular treatment - hosp visits, scans, trips to London on train, the fact I can’t work more hours cos the Herceptin makes me feel whacked, and all the emotional toll that makes me exhausted sometimes. Glad you brought this up Nicky.
Let us know how you get on, girls
Jx

Hi Ladies, As some of you know, I’ve just been given the DLA a fortnight ago and the lady who sorted it out for me told me that in 3 years time I would have to reapply but that it wouldn’t be a problem. She said to contact her (through the Macmillans) and they will complete the form and sort it out for me. So it might be as well to contact them and ask for the local Benefits Officer to deal with it. Mine was wondeful, came to the house and all I had to do was sign the form. Anyway, just thought this might help. Hope you are all ok today. Lotsa love, Dianne x x x

Hi all,

not sure if what I have received is the same. I have been on full DLA under Special Rules DS1500 for a while now and received a letter yesterday. It has MU47 stamp on it and asks for Part 1 - details of GP, Part 2 - Hospital Doctor or specialist, Part 3 anyone else who could tell them about my illnesses/disabilities, Part 4 - which of them could best tell. When I saw them all last. Part 5 - About illnesses/disabilities and treatment/help received and there are columns to put the meds and dosages in.

Is this generally what you have all received? It doesnt ask if my conditions is better/worse than when I applied and I have had progression. But they do say if there are more medicines/treatment that you need to tell them about then put them on an extra piece of paper. So I think I will do that - I don’t know if they take notice or how much they refer back to those treating you but I often feel if they don’t ask the questions you would like there is nothing lost by putting it in :). None of this came as a surprise because I had been told that after 3 years they do re-assess.

Dawn

Hi Everyone
I have bone mets (extensive) and in the lymph system, but no other mets at the moment. I am currently working and am on capecitabine and bondronat and am exhausted most of the time. The capecitabine is long term. I have been a lone parent of 3 for 10 yrs now and have always struggled financially. Their dad has a severe mental illness and will never be able to work, so I have had no financial help from him whatsoever. I would dearly love to give up work if I could afford to but when I contacted Macmillan, they said I wasn’t entitled to anything if I could walk for a few 100 yds from my front door and if I could wash and dress myself independently. I do not have a ‘terminal’ illness, ie I am expected to live longer than 6 months. I feel I am in the middle, ie going to live for a few years hopefully, but not well enough to be working all the time. My employers let me drop from full time to 4 days recently, but frankly I struggle hugely with that. Does anyone know of anything I can do to get money from any other source as I can’t get DLA.

Thanks
Claire x

Hi Clare,
I’m surprised Macmillan didn’t follow through on the DLA. AS I understand it we can get DLA under special rules because we have secondaries. Yes, many secondary patients live much longer than 6 months but Dr can’t guarantee that. Was it a Mac nurse or Mac benefits advisor you spoke to? Do speak to their specialist benefits advisor.There are 2 rates of DLA & even if you didn’t get the mobility rate you should be able to get the other part which is about £75 per week. My Mac nurse came and filled the forms in for me last week and she has been the one to get my GP to sign etc, all I had to do was sign the form. Don’t give-up, talk to someone else at Macmillan.
Best wishes
Julie

As Julie says, you have been given incorrect advice !!

Go back and seek a different advisor if necessary. High rate care should be automatic, wheras the mobility depends on the nature of your mets. They do not usually quibble about awarding high rate mobility as well, if you have bone mets.

Another Julie x

Ive just reapplied after 3yrs, I have Liver mets. I got my onc to complete the special rules form and sent this with the application form. Ive just received confirmation Ive going to receive DLA for a further on the Higher rates. They havnt requested any further information from my doctors.

I too have been told that I don’t qualify for DLA under the special rules as my mets aren’t in a life threatening organ.

I start cabecitabine indefinately next week. Had my first recurrance 3 weeks after chemo for my primary & secondaries were diagnosed 10 weeks later. I just feel that my feet haven’t touched the ground since diagnosis last July & I now have to start thinking about going back to work when emotionally I really don’t feel ready.

Hxx

Hi
Thank you both Julies for your replies. What you say interests me and I am about to get on the phone to Macmillan and see if I can get anywhere. The fact that I am on chemo for the rest of my days now, I feel, affects my life considerably because, although Capecitabine is the ‘kindest’ chemo I have been on, it does make me very tired and I always feel slightly under par when on it. And my feet are another matter… I will let you know how I get on.
Hayz, I know exactly what you mean when you say you are not emotionally ready to go back to work. I am not really physically or emotionally up to it, and I feel really guilty because i have been off sick so much lately. I don’t like letting my employers down. It’s hard when you can’t give up work (or work less hrs) because you can’t afford to. At the mo I feel like I’m shut in a box with no options, but I’ll see if I get any joy from Macmillan.

Love Claire x

Hi Claire

Have you got a breast cancer care nurse, or speak to your onc, or his secretary. You should be entitled as you have secondaries, and need your onc to send a DS1500 form.

Dawn, mine was just the normal DLA form I got 3 years ago, so filled in little bit and getting onc to organise DLA form. So not sure what you have recieved. I dont fill in any of the disability bits or carers bits.

Hope everyone gets their renewal.

Take care
Love
Dawn
xxx

Hi again – I received the same form as Dawn, filled it in & returned it to the DWP. They’ve sent me another letter, to say they’re contacting my onc about my claim. Will let you all know what they decide.
I’m so disappointed when I hear of doctors or nurses deciding we’re not elligible for DLA – without even submitting an application. And without considering the use of the “special rules” DS1500 form for those of us with mets – we have an incurable, terminal illness, that is unpredictable in terms of time, but not in terms of outcome. That pretty much sums up the DS1500 requirements. Please do try to get advice and support from specialist benefits advisors, either at your local CAB or from MacMillan.
Marilyn x

I’ve just received my form for renewal… need to see my doctor on Tuesday for the DS1500 form… I’m hoping that there will be no issues with it, as we rely heavily on that money so I don’t need to go back to work just yet.
Fingers crossed for us all xxxx

None of us needs all this extra hassle. Is this a new thing, a clampdown on benefits initiative thing? I’ve never received one of these letters…perhaps I will now!..I’ve just received the standard tell us if your situation changes blurb. It’s so unfair getting special rules seems to be a real post code lottery. xx

I agree that none of us need this extra hassle to ‘prove’ we do have an incurable and, most likely, terminal illness. If you are applying for it for the first time I would definitely speak to a benefits advisor with MacMillan. The girl who helped me did all of the form filling and you don’t need to fill it all in, then I had to get my GP to sign the DS1500. He was reluctant at first as he said ‘you’ve got longer than 6 months to live’ but he did sign it when I asked him to guarantee I WOULD be here in 6 months time - which of course none of them can do with this unpredictable disease. Another GP at the same surgery who I had first asked about the forms said to fill them in with your worst days in mind rather than when you feel OK. As to re-applying I haven’t been getting DLA for that long but I did always know you would be re-assessed at some point - let’s hope it is the usual reassessment rather than any new initiative to deprive us of additional financial help that many of us need.
Nicky x

Hi everybody,

Hope you don’t mind me posting here (not dx with secondaries) but I do get DLA HRM and LRC for a non bc related condition. I found this link which I think might answer some of your questions as to the discrepancies in how you are all being treated.

disabilityalliance.org/special.htm

I also agree with Belinda that it’s a disgrace that you are subjected to this hassle and I hope you ALL get what you need and deserve.
Good luck
Roberta

Hmmmm . . . some of us are being asked to re-apply, and some of us aren’t, but DawnHC and I are being “reviewed” by the DWP. More “post-code lottery”?
Marilyn x

p.s. Hi J – how are you?